Search results

Anyone know how they are testing for Lyme?

A reasonably good article on the BBC focusing on some Welsh patients and the situation RE care and specialist services. https://www.bbc.co.uk/news/articles/cpv8e71p3evo There's also a link to a BBC Sounds / BBC Radio Wales piece with patients and the parents of a very severe patient...

I would put money on one of that lot having been in contact.

It is mentioned that the BBC received feedback suggesting that the "potrayal of ME was too negative", and that one listener had writen in to suggest "there is treatment and crucially there is hope." Sounds very familiar.....

Oh I forgot you had a Google Docs. I hope you can make any changes if you agree with them. And thanks for fundraising.

Most people won't know what this is, but if included I would call it the '2021 NICE guideline for ME/CFS' This is a slightly awkward phrasing. I would rephrase as 'notoriously underfunded' or something to that effect. I would not just focus on welfare spending. The way this is usually...

You might know this already, but PoTS diagnosic criteria exclude othostatic hypotension and therefore blood pressure should always be measured when testing for PoTS. I don't know why people focus on PoTS more than OH. It would be interesting to know how prevalent each is in people with ME/CFS...

Ok, good. Well, it seems from a quick google that the answer is 'more likely'. And this is related to a known phenomenon, apparently, called polyautoimmunity (basically having two or more autoimmune conditions). The risk is higher because some AI patients have a propensity to develop more AI...

I think this is the question you are asking, and this page provides an answer: "Yes. Having one autoimmune disease slightly increases your risk of developing one or more additional autoimmune condition." (compared to the general population)...

Less likely than what, though? That a given person is more or less likely to have 2 or more AIs than just 1? Or that a person with 1 AI is more or less likely to develop a different, second, AI than another individual developing their first AI? Or maybe it doesn't matter now as Jonathan never...

I think they may have done a while back. I think Nina has worked part time for most of her illness.

Looks like the title of the BBC article has been changed.

It's so unbelieveably frustrating. I have sent many emails over the years. I have sent another one. I imagine the more they get the more likely a change to the title.

Miller wrote with Garner this BMJ piece on hope and severe ME, if anyone had forgotten: https://www.bmj.com/content/389/bmj.r977

I just did a search on the FME website for 'minutes' and there were actually some results, but this content is not linked to from any of the main pages: https://forward-me.co.uk/?s=minutes They only cover November 2021–November 2022 (when Andrew Morris was Chair).

FYI: This is a preprint from 2019. The published paper from 2020 is here: https://www.nature.com/articles/s41375-020-0810-4

Of course — my comment was not meant as a sweeping generalizaiton. I am explicitly talking about this in the context of PAG and similar groups where everyone seems to be pulling in the same direction, because that was my experience as a member of PAG.

That must have gone live this weekend as it was still down a few days ago. It's definitely an improvement on the last effort but there's a lot of stuff missing and it still looks quite basic, like they've not got a budget to get a website professionally designed. Sorry, didn't get notified of...

This seems self-evident. I really don't know what the aim was here. There's a paywall for me.

I can't find anything about it — just a few other studies with the same name. I've been searching for info on EU Horizon projects that have been funded, but can't find much on that either.